About

Eye on the Cure is the official blog of the Foundation Fighting Blindness, a private non-profit that raises funds for research targeting treatments and cures for vision-robbing retinal diseases. Authored by Dr. Stephen Rose, the Foundation’s chief research officer, and other contributors, the blog provides an insider view of the retinal research field, which, over the past decade, has exploded with scientific discoveries and advancements.

Steve, as he likes to be called, is a renowned expert on retinal research, which means Eye on the Cure provides readers with updates that no other blog can. Steve comments on the latest news, provides useful information in easy-to-understand language and connects readers with valuable resources, including those provided by the Foundation.

Founded in 1971, FFB has raised more than $500 million for research intended to eradicate retinal degenerations, such as retinitis pigmentosa and age-related macular degeneration, affecting more than 10 million Americans.

Unfortunately, we can only speak about research for retinal degenerative diseases that affect the retina in the eye. Your doctors and other eye specialists will be best suited to answer your questions about what treatments are available for your own condition.

You may want to visit the website of the National Eye Institute (http://www.nei.nih.gov/) or reach out to someone at the institute – they may be able to point you in the correct direction on other resources or organizations who specialize in your condition.

Which is incredibly attention-grabbing, You are an exceedingly specialized blogger. We have signed up with your feast and also crunch pertaining to in the hunt for further of your great post. In addition, We’ve discussed your web blog during my social support systems

My name is George Msovela Pangawe a male of 51 years old and i have macular degeneration (severe problem) and I’m interested in any information that could help to cure my problem because as the days going on I’m loosing my sight vision. Thank you in advance.

i have a friend that is in need of answers or a doctor that can help him he has stargardts eye disease or was told that im tring to help him he can see alittle but it dont look great he needs my help and yours thanks so much and have a blessed day

I HAVE BEEN DIAGONSED WITH RETINITIS PIGMENTOSIA.. I AM 72 YEARS OLSD IT STARTED 10 YEARS AGO AND IS BECOMING PROGEIVELY WORSE.. I HAVE 8 GRANDCHILDRE MY OLDEST GRANDDAUGHTER WHO ATTENDS BARNARD UNIVERSITY IS LOSING HER EYE SIGHT IF U CAN SEND ME INFORMATION ON ALL CURES OR HELP I WOULD BE VERY GRATEFUL.. IF YOU W CAN PLEASE SEND IT TO HER AS WELL. HER NAME IS NAOMI R. MARNE HER E MAIL IS NAOMI@MARNE.COM

You and your granddaughter may want to consider trying to identify your disease gene as there are already several clinical trials for RP that require a molecular (genetic) diagnosis to participate. Currently over 50 genes have been shown to be involved in RP. For information on genetic testing, please see the following web link to download a PDF document: http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf

You may also want to consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. For more information on “My Retina Tracker” please see the following web link:https://www.myretinatracker.org/

I am 74 years old. I have had retinitis pigmentosa for 10 years. My vision, reading and colors are progressively getting worse. I am very much interested in any research information you can give me. I am particularly interested in stem cell therapy. I would be very grateful for your help in this matter. Thank you.

You may also want to try and identify your disease gene as there are already several clinical trials for RP that require a molecular (genetic) diagnosis to participate. Currently over 50 genes have been shown to be involved in RP. For information on genetic testing, please see the following web link to download a PDF document:http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf

You should also consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. For more information on “My Retina Tracker” please see the following web link:https://www.myretinatracker.org/

I hope you find this information helpful. Please let me know if there is anything else I can help you with.

I have a daughter with RP. I would like to know, if there is any thing being done to restore visoin!
Please inform us if there is anything worthwhile going on so we can provide her with that help.
thanks
anjana

You may also want to try to identify your daughter’s disease gene/mutation. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what research is being done. Your daughter may also be able to qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf

Whether you identify your daughter’s disease gene or not, you should consider entering her information in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. For more information on “My Retina Tracker” please see the following web link:https://www.myretinatracker.org/

It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.

My name is Chandra a male of 29 years old. I have retinitis pigmentosa. I am very much interested in any research information you can give me. I am particularly interested in stem cell therapy. I would be very grateful for your help in this matter. My email is nwwmailtp@gmail.com. Thank You.

I was diagnosed with Serpiginous Choroiditis in 2008. I was treated with corticosteroids but saw no improvement. I also tried immuno-suppressants but the disease got worse and I abandoned the treatment after 3-4 months. For the past 5 years, I have been receiving Avastin / Lucentis injections every 4-6 weeks to keep the swelling to a minimum and to keep a neo-vascularization at bay. However, over time, my eyesight has slowly but progressively deteriorated.

In searching for solutions, I noticed a seasonality to the disease. It was much more active in the Spring and Fall. Through some retina specialists at Bascom Palmer and Cleveland Clinic, I heard that other patients with serpiginous also noticed this seasonality. Last fall, I learned that I was allergic to dust mites and have tried to drastically lower my exposure to dust mites. In doing so, the progress of the disease seems to have stopped. Is there any research connecting allergies to uveitis? Or is this just a lull in the progress of the disease?

Iam from Corpus Christi Texas & have two boys that were diagnosed with Lebers Hereditary Optic Neuropathy,ages 17 & 22. Iam very much interested,would this work for my boys that are visually impaired with very poor vision.

Hello,
I am contacting you with regards to my 4 year old daughter. She has very low vision and a Nystagmus. Recently, a mutation of CNGA3 has been confirmed as the cause of her visual problems. Due to the fact that she is able to see colors and is not yet light sensitive the diagnosis given to us was oligocone trichomacy. Now I am interested in any research and clinical trials looking into gene therapy for this specific gene. What are the right reserach groups and KOLs to contact?
thank you very much for your support which is much appreciated.
Felicitas

You will be happy to know that AGTC, a gene therapy company in Florida, is developing a gene therapy treatment for CNGA3-related disease. To read more, please see the following link:http://www.agtc.com/products/achromatopsia

You should also consider enrolling in “My Retina Tracker”, a free registry that helps link people with retinal disease to appropriate clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link: https://www.myretinatracker.org/

Of general interest, there is a “Stargardt – Macular Degeneration” Facebook page where people can communicate with other people affected by Stargardt disease. Here is the link: https://www.facebook.com/groups/Stargardts/

Finally, below is a list of pharmaceutical companies that are developing therapies for Stargardt Disease:

Acucela,( http://www.acucela.com/) is a Seattle-based biotechnology company that is developing several drugs for retinal diseases such as AMD, dry eye, diabetic retinopathy, retinopathy of prematurity and Stargardt disease. Acucela’s visual cycle modulators (VCM) reduce the activity of the rod visual system — in essence, “slowing it down” and reducing the metabolic load on the retina. Reducing the speed of the visual cycle has been shown to protect the retina from light damage and reduce the accumulation of retinal-related toxic by-products, including A2E, which is implicated in both Stargardt disease and dry AMD. The Company’s lead investigational compound (Emixustat™) is currently in Phase 3 trials for dry AMD. Once approved by the FDA, Emixustat could be prescribed for Stargardt disease.

Ocata Therapeutics (https://www.ocata.com/), a Santa Monica-based biotechnology company, has developed an RPE cell line that is derived from embryonic stem cells (ESC). Studies have shown that the subretinal transplantation of ESC-RPE cells in a rat RP model resulted in 100% visual function rescue. Functional rescue was also achieved in the Stargardt mouse model with near-normal functional measurements recorded at more than 70 days. The RPE cell transplantation studies are now in Phase 2 human clinicals. Here is the link to the Clinical Trials.Gov recruitment web page: http://www.clinicaltrials.gov/ct2/show/NCT01469832?term=advanced+cell+technology&rank=2
*Note: It is not known how long the transplanted RPE cells will last in a human patient with Stargardt disease. Unless gene or pharmaceutical-based augmentation treatment is coupled to the RPE transplant, toxic A2E will continue to be produced and eventually kill the RPE cells.

Alkeus, (http://alkeus.com/) Alkeus has developed a form of vitamin A that upon light interaction, does not form toxic vitamin A metabolites and A2E. Alkeus’ lead compound, ALK-001, is an oral compound with a well-understood mechanism of action. ALK-001 was specifically designed to treat Stargardt disease by preventing the formation of these toxic vitamin A dimers in the eye. Alkeus is currently recruiting patients for a Phase 2 human clinical trial. Here is the link to the clinical trials.gov recruitment page: https://www.clinicaltrials.gov/ct2/show/NCT02402660

Vision Medicine (Previously Visum) The Foundation Fighting Blindness is partnering with Vision Medicine to develop a small molecule therapy Stargardt disease. Vision Medicine’s novel approach proposes to develop drugs that will temporarily control levels of A2E in the eye and preserve the natural vision cycle, leading to a therapeutic treatment. Vision Medicine has discovered a unique chemical approach to sequester rather than eliminate A2E. Through this process, 25 diverse FDA approved drugs demonstrating both mechanistic and in vivo efficacy have been identified. Vision Medicine has identified a lead compound, VM 200, which is an enantiomer of an FDA approved drug that demonstrates complete retinal protection in preclinical studies. Vision Medicine plans to conduct Phase I and Phase II clinical trials in the near future.

I am Jin Woo from Korea
This e-mail due to my 1st son who is color blinded (red & green)
In Korea, the most problem is that Korean society do not give job and major opprotunity to color blindness about various field.
I can agree and accept that some of major and job need exact colors but color blindness must be disadvantage in selecting major & job which don’t need color in Korea.
For me, the most painful is that my son cannot see beautiful sunshine and nature with same color as I do

I heard color blindness may be cured by gene therapy recently So, I want to know about below.
1. When will trial treatment do for human color blindness?
2. I heard these treatment need approval some of association for example, FDA
Is there possiblity in getting approval from those association for human use soon?
3. I really would like to know how long it aproximately take until commercialization in the world after approval.

And color blinded people hide their vision deficiency

All parenents who has color blinded children have had hard time and sickness at heart due to this situation

Stem cell therapy is currently being evaluated for possible use in optic nerve damage for diseases like glaucoma. The research is slowly moving towards the clinic but will probably not be ready for clinical trials for a few more years. Dr. Dong Chen at Schepens’ Eye Institute is currently working in this area. To read more about his work, please see the following web link: http://www.schepens.harvard.edu/research-storychen/dong-feng-chen-md-phd/research-story.html

Hi, My name is Derek, Im 33 years old, and have Choroideremia. This disease was passed on from my grandfather who is totally blind at this point. He is 77 now and gave up his license and was declared legally blind at the age of 35. Since im approaching that same age it concerns me more and more about the retinal deterioration. If there is any information that would benefit myself or my grandfather, whether it be precautions, dietary changes, anything at all I would greatly appreciate the info. Thank You for anything you can provide me.

Finally, you may also find it helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

I have a son that at the age of 4 was diagnostic with retina cone dystrophy. Can you please let me know if you can help him. He is considered legally blind. He is 30 years old. We leave in New Orleans, Louisiana.
Thank you and God bless you.

Hi, my name is Edna Benavides, I have a sister who is 62 years old, diagnosed with RP, she is almost blind, she said that she just can see a little light and is very difficult to focus. I want to know if is any opportunity to participate on any research or treatment, she is in Colombia, South America. Please help me to help her.
thanks

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Regular Contributors

Dr. Steve Rose

Steve is highly respected for his expertise and tireless commitment to finding treatments and cures for vision-robbing retinal diseases. Read More...

Ben Shaberman

As the Foundation's Director, Science Communica- tions, Ben writes science and research articles for the Foundation’s website, newsletters and Eye on the Cure blog. Read More...

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